Joan v Hi

Hi everyone,my husband is suffering from psp, he was diagnosed last year,but i think he has been suffering for the past four years, he can hardly walk or talk, he groans all the time,i have to feed him at times he is coughing all the time etc. He has had such a lot of falls it's scary, he has had five falls alone this week and ended up in hospital, i am not coping very well, i love him very much that it hurts wonder if i can cope much longer, sorry if it seems that I'm moaning just had to get it off my chest.

18 Replies

  • Hi, Joan. So sorry to hear you and your husband are having such a hard time. Don't ever apologize here for letting your feelings out. That's one of the main things this place is for, and we all understand. The falling is the worst. It IS scary, and upsetting. You never know what you'll find when you run to the sound of him hitting the floor, right? It does take the starch out of a person.

    And the groaning is bad, but sometimes I can get him singing instead...sort of singing. That helps.

    Anyway, it sounds like you need some respite. If you are in the UK you should be able to get help with that, I believe. Someone here will be along with some better advice than I have, but I wanted you to know that you've been heard. You're not completely on your own. Love and peace, Easterncedar

  • Hi EC, Singing was so ething C loved doing right till the end, especially singing along to old Cole Porter, Irving Berlin songs and Christmas carols. It never occurred to me to get him to sing instead of groaning and now it's too late.

    But I am slowly starting to feel 'normal' again and can see it is going to be a long, slow process of recovery. daughter is off to Istanbul today returns next Monday, so I shall be on my own for first time in many years. We shall see how that feels.

  • I hope your solitude feels restorative and peaceful, Pattz.

  • It surely does and, as the vegan is away, it's chicken and mushroom pot pie for dinner. tomorrow a long-overdue hair cut. Better go and get the oven on.........

    How are you? Got your retirement date yet?


  • No, I'm going to keep going as long as I can. I'm still 4 years short of early retirement. I have finally arranged to have aides coming in for 40 hours a week. We haven't settled into the new regime yet, but I am hoping things will be more stable soon. Enjoy your pot pie! I love pot pie!

  • Thank you Eastercedar Xx love and light Joan Xx.

  • Welcome to this site Joan. We all know exactly how you feel and don't worry about seeming to be moaning - we all have to do it at times. My husband was diagnosed in 2013 and has all the symptoms you describe although he doesn't walk at all now so doesn't have any falls. Have you got any help? If you are in the UK there are various things you can do to get practical help and support for you. Have you been in touch with your PSPA area support person and your local hospice?

    Vicki x

  • It sounds really tough going and sorry to hear this. It's good that you have posted here because the online support can be invaluable. It's perfectly ok and natural to feel worried, it is scary not knowing when the next fall is going to be, or how it might hurt him. If you're feeling guilty about feeling you might not be able to cope remember that you're under a lot of pressure now and it's because you love him it effects you so much. All the best to you both. Jeremy X

  • Oh dear, poor you. You sum up how many of us feel or have felt at some time. This site is good for getting advice or letting off steam. So using it is a form of self help. The tragedy is because we love them so much we are desperately worried about the present and the future in relation to our loved ones. Planning is good but worrying about what may happen is corrosive. I have found that being in control of things that are possible to manage helps me , even if it's just sorting out his sock drawer!

    I now concentrate on the present. Also, I have finally accepted that this wretched disease causes B to be impulsive and I can't protect him all the time, although I still try to do so. He is in a wheelchair now so we have far less falls, but I still jump when I hear a thump or a bang. My heart goes out to you. Good luck and God bless. X

  • What help, if any, are you getting at the moment ? Contact your GP for referral to a Neurologist, a SALT (Speech and language therapist), a Community Matron, OT (Occupational therapist), a physio, a Parkinsons nurse, social worker (ours was useless but worth a try), the local hospice (they are not just for end of life), the local carers agency and hopefully they will give you names of some homecare companies who will come in and help with washing, dressing etc. Also consider a daycare place, we both hated the thought of it but it soon became the mainstay of my sanity and P `quite` enjoyed it !

    We have all hated accepting help especially when it involves people coming into your home, but believe me it is inevitable and the sooner you get it all in place it will help you cope with it all a little longer.

    Sadly, P is now in full time care but all the agencies I have mentioned helped me keep him at home for longer than any of them expected.

    We all here know what you are going through, so shout, moan, whatever you need to do, we all understand. By the way, you should contact the PSPA if you haven`t already - they are brilliant.


  • Hi Joan, welcome to the one place in the world, that you CAN say exactly what you want and not get judged. We all understand completely, what you are going through. PSP is the pits, it has to be the most evil disease mankind has to deal with. The fact that it's rare and finding anybody else, including the medical professional, that have ever heard of it, doesn't help!!!

    What help are you getting? And where in the world do you live? There is help out there, but it doesn't come to you. Everything has to be fought for, I know, if only you had the time, strength and energy!

    Let's us know where you live, then everyone from that country can help advise you! Until then, know that you are not alone, you have just found a huge family, that know what you are going through, that care and will be able to help you along this journey that our loved ones have found themselves on!

    Lots of love


  • Hi Heady, and all of you that have sent your support for my husband Martin and myself, you're right Psp is the most horrible and evil disease anyone could suffer with we live in Hull East Yorkshire in England, Martin was referred to a neurologist who diagnosed psp, we were referred to our local hospice and Martin goes once a week for day care they are brilliant. We also have carer's each morning to wash and dress Martin, poor lad i feel so sad for him as he has not only got psp but has also had kidney cancer, lung cancer, stroke heart disease and has two aneurysms, but he keeps on going and he is still with me, i have cared for ten years,thank you all for your advice and support, love and light Xx Joan Xx

  • You can probably teach us all a thing or two! Glad to hear you are in touch with the local hospice. They really are the best support there is around. Have you joined the PSPA yet? They are another place to get help, if only, someone to talk too, when you are down!

    As for your comment about not coping, after 10 years of what you have been doing, is a miracle! None of us think we are coping, how can you, when your loved one is getting worse. Carers are meant to make people better, aren't they? That's what we think! But take a step back, look at what you are actually doing, of course you are coping! OK, you need a break, just like the rest of us. At the end of the day, we can only do what we can, if that isn't good enough, hey ho! We have tried. Joan, after 10 years of caring, I think you have tried and won. If you are now running out of steam, please don't beat yourself up, you HAVE done your very best!!!

    Lots of love


  • Hi Joan v, Sorry to hear that your husband is suffering from psp. My father was diagnosed and he most likely had it for the 5 years prior. Make sure you get support for yourself and get some time for you, so you can be your best. Yoga really helps with relieving some of the stress, some breathing exercises would be also great. there is no place like here to voice out your voice. no apologies necessary. Love

  • Hi Dadaroo, starting to get more support now Martin going to our local hospice for five days respite in March so I will probably go away then. Yoga sound good but i suffer from arthritis, meditation is very good so I try to do that as often as I can,thank you for you're support. Love and light Joan x

  • You are clearly doing really well, Joan, but really need the respite.

    Its so exhausting being ever- ready for a fall.

    You, like us all, are also grieving all the time for the loss of more and more of our loved one. We're in pain all the time.We miss the conversation and companionship.

    Its torture.

    I was brought up in Hull, although I now live in London.

    love, Jean x

  • Hi Jean you are right, i do need respite,I'm having five days in March, Martin will go to our local hospice,yes i suppose i am grieving, that's how i feel some days. So nice to hear you were brought up in Hull, were did you live? I was born and bred in County Durham. Love and light Joan. Xx to

  • I lived in North Hull long long ago. My sister still lives on Chants Ave. and I have many nieces and nephews there.

    We have a holiday home in Bridlington and so have come north a lot.

    Enjoy your respite.

    love Jean x

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